April 2012
Newsletter

Dear Friends,

Here is an update on morphine sales from the Government Opium and Alkaloid Works, the only manufacturer of morphine powder in the country. All of it is used in the country (India exports raw opium) and so this should reflect the consumption trend of morphine in the country.

The peaks in 2000 and 2001 was because of the huge quantity bought by the Government for free distribution to the regional cancer centers (RCCs). We know that most of it was never used. The 2007 peak was a compensatory rise caused by interruptions in supply in the previous two years, and thus was artificial.

Despite these confounding factors, the fact remains that in the past four years, the consumption of morphine in the country has been stable, not rising. This is indeed worrying!

‘Again,’ she demanded, holding out her hands. As peals of her laughter rang out, the happiness and relief on her mother’s face was palpable.

Two months ago, little Diya could not sit up or even lift her hands because myopathy had weakened her skeletal muscles. Today, she sits up on her mother’s lap to play with toys, thanks to the efforts at pain management and continued physiotherapy.

The Kids Collective (Kuttikkoottam) is formed of more than 150 children whose education Pallium India supports.

They are all children from families where the breadwinner died or is paralyzed; they did not have a lot of brightness in their lives.

Some of our volunteers – Brigadier Oommen, Rema Ramparasad, Leela Devi, Mr Sen and others – felt that they need more than books and school fees and thus was born the Kids’ Collective.

During three days of the summer vacation, 37 of the kids got together for a summer camp where they could learn and play and have a bit of fun. Two days in JMM Center and one day of outing to the zoo and planetarium.

And what amazing talents they displayed! Painters, writers, public speakers – the group had them all. They certainly gave us a treat.

We thank Dr Richa Sood and Dr Amit Sood from the Mayo clinic whose contribution was enough for the conduct of the summer camp. There were many other donations – all that is going to a fund for the continued support from the children. As we write this, a career guidance program for selected children is under way!

Thank you very much donors and thank you JMM Study Center for providing the facilities.

Congratulations Dr Mary Ann and team!

A few simple words–or even just a silent, supportive presence – can do so much to bring peace to the seriously ill and dying.

This was the essential message of the “Compassion in Action” Conference, held at Santa Clara University in Santa Clara, California, USA on March 30, 2012. The theme of the one-day event was “Providing ‘The Best Care Possible’ Through the End of Life.”

Pallium India-USA, which was a sponsor of the event, provided information to participants about culturally sensitive hospice volunteering, advance care planning, and the situation in India.

Kersi Daruwalla, a longtime hospice volunteer who has recently joined Pallium India-USA, was a stalwart at the table, as were volunteers Zarina Kaji and Sunshine Mugrabi. Kersi had this to say:

This is a type of conference I recommend all of us can attend from time to time. It revitalizes every cell in your body, and helps you understand how simple life and relationships can be. Yet, it is up to us to make this happen.

I can sum this experience up in the following words: It feels good to be a human, caring for another human.

“Nothing that I did in medical school prepared me for what I do now, at least in terms of Palliative Medicine.”

He describes his work in ways that are both heartening and heart rending – highlighting the emotional challenges and sometimes intense family dynamics he encounters. At the end of the day, he often needs an hour sitting in silence in his living room.

His own personal story is striking as well.

He became a doctor late in life, not entering medical school until the age of 49. Prior to that, he was a professional writer, penning books for major publishers.

Why did he become a doctor? And why palliative medicine?

“Life, in fact, was my only preparation for both,

My mother, dead at 49 of breast cancer; my father, dead at 66, himself of pancreatic cancer; me, my bride, then of only months, then suddenly helping me to raise my 11-year-old brother.

And don’t ask me to tell you about my father’s brothers, lost in their 20s, accidents both;

his mother, dead of cancer in her 40s;

her own mother, killed even younger;

yes, by cancer.”

We come to this work for many different reasons, and even–such as in this case–at different points in our lives.

But as he puts it, the doing of the work is:

“… always good… Always rewarding.

And always, considering with whom I work, in good, very good, company.”

Pallium India-USA plans to join thousands of Americans across the country for National Healthcare Decisions Day onApril 16 2012, which brings to the forefront the need to make one’s future healthcare decisions known to family, friends and healthcare providers.

Advance Healthcare Directives are instructions for your medical decisions if you are not able to speak for yourself. The program is meant to inspire, educate, and empower the community to take charge of its medical care at a crucial time in one’s life.

The San Jose Mercury News coverage of the issue is well worth a read, part of a larger series on the “Cost of Dying,” from reporter Lisa M. Krieger. This piece gets to the heart of why an Advance Healthcare Directive is such an important document:

Bill Newman has seen his share of hospitals. That’s why he plans to never go back.‘If I fall over, just let me go. No 911 guys with paddles. No bells and whistles,’ said the 87-year-old retired high school teacher and double bypass survivor.

[…] Modern medicine prolongs our lives in ways once thought unimaginable. But increasingly, we dwindle into frailty, disease and dementia, ill-prepared for the day when treatment fails us. We can do better, if we make a conscious choice.”

Pallium India-USA’s mission includes educating the community about the crucial need to put one’s wishes on paper so as to ensure the best quality end of life care.

The World Health Organization is evolving global strategy for control of non-communicable diseases. Several international organizations have been working together to include access to palliative care as an important component of the program.

Access to palliative care assessed by morphine-equivalent consumption of strong opioid analgesics (excluding methadone) per death from cancer

We all know that this statement is not perfect.

For one thing, morphine consumption is an imperfect indicator of access to palliative care; but we also realize that there is no totally satisfactory indicator.

We are particularly unhappy that the access to palliative care has been needlessly linked to cancer. We worry that with this sentence, the WHO may be unintentionally conveying to member countries that palliative care is meant only for cancer.

However, we also realize that it has been a huge achievement to have gone thus far and any change in that wording at this stage will be almost impossible.

WHO asks all member countries to respond to this with their comments by April 19. There will be a certain maximum number of indicators and it will need several countries’ support to ensure that the current recommendation will stay in the final form of the document.

This is the time when we must use all our contacts with the Department of Health to persuade them to strongly argue to keep the recommendation in.

In it, the authors Lukas Radbruch, MR Rajagopal (Pallium India chairman), Liliana De Lima, Eduardo Bruera, David Currow, Roberto Wenk, Jim Cleary, Carla Ripamonti and Michael I Bennett, members of the research and scientific committee of the IAHPC point out that recent studies linking opioids to cancer could be misunderstood:

“Two new studies and a commentary published in the April edition of the journal Anesthesiology report a link between opioid drugs used to relieve pain in postoperative and chronic cancer patients and cancer growth and spread.

“The controversy on the published research data indicates that the effect of opioids on cancer growth and spread is rather small – a borderline effect.

The available evidence might also be used as a plea to use opioids regularly, not only for short periods of time, and in effective (high) dosages.

Even if future studies demonstrate that opioids promote cancer growth and spread, this negative effect is far outweighed by the positive effects of adequate relief of suffering.

Unalleviated pain, with its stress response and its adverse effects on energy, appetite and on general well-being would be a far more significant problem, and might also lead to significant comorbidity and shorter survival.”

The Summit will provide a unique open-registration event in the international health community to enhance knowledge of breast health care delivery in low- and middle-income countries (LMCs) from the perspective of Early Disease, Late Disease and End-of-life & Palliative Care.

Scientifically peer-reviewed Guidelines for International Breast Health and Cancer Control – Supportive Care and Quality of Life will result from the 2012 summit, as important and rare medical tools, that will also serve to highlight neglected QOL and palliation issues through mixed-method implementation science research.

Application Deadline: May 15, 2012

Award: This fellowship offers a stipend of up to US$50,000 per year for 2 consecutive years (up to a total of US$100,000).

Purpose: Established in 1998 in memory of IASP’s founder, the John J. Bonica Trainee Fellowship supports training in various aspects of pain research to a trainee who is in an early stage of his or her career.

Eligibility: To be considered for this fellowship, mentors and trainees must have been members of IASP for at least one year before applying.

We are happy to announce that the April 2012 issue of SAHAYATRA, our monthly Malayalam newsletter, is now available for download here…

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Awarding-winning LIFE Before Death Series continues…

The “LIFE Before Death” series of short movies continue to be released, one every week. They are not only very informative to the public; but also make powerful advocacy material for the palliative care community.

Thank you, Mike Hill and team of Moonshine Movies and thank you, Lien foundation,International Association for the Study of Pain, The Mayday Fund, the Union for International Cancer Control and The Institute for Palliative Medicine at San Diego Hospice International Programs. For more information and to view the entire series, visit the Life Before Death website…

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PARTING SHOT

Since it was published on February 1 an article in the UK Guardian headlined “Top five regrets of the dying” has consistently been among the top 10 most viewed Life and Style section articles. In fact, for a long period of time, that article was the #1 most read.

The article is based on a blog by a palliative care nurse, Bronnie Ware, called Inspiration and Chai. Having nursed many patients through their last days, she was able to summarize the five most common regrets they experienced, which were as follows:

I wish I’d had the courage to live a life true to myself, not the life others expected of me.

I wish I hadn’t worked so hard.

I wish I’d had the courage to express my feelings.

I wish I had stayed in touch with my friends.

I wish that I had let myself be happier

What is truly striking here is the immense popularity of this article. The UK Guardian tells us that the Life and Style section of the paper gets nearly three million (2.97) unique visitors a month. Clearly, it was read and discussed in many households across Britain and around the world.

This should give those of us in the healthcare profession great hope, and also a certain amount of pause. Many physicians, nurses, and social workers work from the basic assumption that the average person doesn’t want to hear anything about death. That thinking or talking about death is too frightening for them. But perhaps this assumption is wrong.

Could it be that doctors are more afraid to think and talk about death than the layman? Many readers of the UK Guardian appear ready and willing to consider their lives in light of the inevitable end that will arrive. They may even want to take steps to actively plan for their own death. So perhaps it is our own discomfort with raising the subject that needs to be addressed. Here’s hoping this opens the way to more, and more honest and direct, conversation about death.

As always, we are deeply grateful for your support, and we invite your responses to any and all that you have read here.

Disclaimer: Information provided by Pallium India has been collected from different sources and though every effort has been made to ensure that it is up-to-date, its accuracy cannot be assured. Pallium India shall have no liability for any damages, loss, injury, or liability whatsoever suffered as a result of reliance on the information provided.